Change of circumstances

[bookworm46]

Hi everyone, anyone had experience of a 'Change of circumstances ' when on pip. This is my question any help or advice would be greatly appreciated.

I've suffered with R A for approximately 25 years since I was a little older than 20 years old. I have not been able to work for the last 15years because of this. I have claimed esa and dla/pip for the last 8 years because of being poorly diagnosed in the early stages. 2 years ago my wife became my carer but after a year she suffered a spinal stroke which left partial paraplegic from the waist down.

I have in the last 6 months started new medication which seems to be making my 'better days' better I.e. walking further etc but my bad days are still poor.

I was wondering if anyone had experience of declaring a change in circumstances and if it made a difference to the dwp.

Sorry for the life story lol but don't know if these new injections will be like what I've had in the past,working well then losing their strength.

Thanks in advance.

[bookworm46]

Hi Ajay575 thanks for the response.

Looking over my forms I think I have been a bit naive because I've only put good days and bad days where especially over the last few months its like bad days where I can't get out the house, average days where I can walk about slowly in pain for periods of about 10 minutes and now good days where I'm not in as much pain and can walk about in less pain but still enough to have to limp slowly.

The frustration at the moment is how erratic it is (can have 4 or 5 bad days in a row or have a couple of weeks of good days all mixed with average days).

[bookworm46]

Ok thanks Ajay575

[Fra22-57]

I think when I first claimed it asked if you could walk 50 mts without having to stop.Its now 30mts I think which isn't far.Same dilemma here for me .I need my husband for support or sister as I trip etc alot and balance poor.My sisters say leave it til next assessment but it does worry me.Even nurse at doctors tells me not to inform them as I need support .when things are so variable with these auto immune diseases etc it is hard.you have been given some good answers from people

[Mmrr]

Remember 'pay back' days, so although you may have a good day, if you are ill the following day because of increased activity, It's not really a good day ! This is my situation.

I therefore need to consciously slow up on a good day to avoid the slump the following day. If this is your situation don't be too eager to add up all the good days as bona fide good days. It's about balance.

Your situation sounds mixed, don't be in too much of a rush to give everything up.

[bookworm46]

It's so frustrating because everything with the dwp is very black and white. I spent at least five years fighting to get the help I needed and the dwp were no help at all.

My previous experience with them tells me they won't understand if I say on good days I may be capable of doing non physical work but on bad days can't get out the house. They seem to think an employer will be fine with this situation. Which I found ten years ago certainly not to be the case.

[Mmrr in reply to bookworm46]

It's the unpredictability of the good and bad days too, so not a lot of planning can be done.

[bookworm46]

Totally agree and I suppose that is the opposite of what an employer will be fine with.

[Leics]

It sounds to me as though your circumstances haven’t changed that much to warrant informing DWP. I would wait until your review. If you change your circumstances and get downgraded it’s very hard to get it back. Don’t do anything hasty. My recent opinion of dwp is that things haven’t changed and trying to explain a good and bad day to someone who isn’t medically trained and has no idea what autoimmune diseases are is like banging your head against a brick wall. Hope your new meds keep improving your situation. But if you still have bad days then what has changed really ?

[nomoreheels]

Hiya bookworm46. I considered requesting a C in C but once I really looked into it I decided not to go ahead as I only had a year before I was due my review, excluding the year lead-up which in fact was more like 8 months. I don't know if you're aware, in all but name it opens up another case, as if you're bringing forward your renewal (or review) so unless your current PIP has a few years to run I'd really consider if it's the right thing. Maybe write a comprehensive list of whether it's worth the risk of a possible reduction in award. Of course it could go the other way but with assessors, shall we say, not all singing from the same hymn sheet you may find yourself in front of one who has less idea of the condition as say your previous one. Awful situation but we read of so many who wish they'd not gone ahead, more than those pleased they did unfortunately.

Sorry to not be more positive in my reply but until it's fully fit for purpose I don't think I'd ever consider it, not if you rely on the extra & particularly in your position which sounds a difficult one, I'm sorry.

[bookworm46]

Yeah thanks for that. I'm pip award lasts until August 2020 but my esa (support group) was awarded Jan this year and they don't give a time period on that award. I'm just worried because of my past history with them before I started getting the right support was a very bad experience.